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Results for “Genetic Privacy”

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At least 145 records · Page 8Linked to original sources
PubMed2001

Ethical issues surrounding the evaluation of oxidative phosphorylation disorders in children.

Genetic testing is becoming increasingly frequent as a part of a pediatric evaluation. Oxidative phosphorylation disorders are likewise becoming part of the differential diagnosis for many children with undiagnosed neurologic problems. The complexity of the oxidative phosphorylation pathway and its dual genetic control by nuclear and mitochondrial DNA raise a number of ethical issues dealing mainly with the informed consent process, the respect for a patient's autonomy, the best interest of the patients and their families, as well as issues of genetic discrimination and genetic privacy laws. Open communication with families in pediatric medicine remains the cornerstone of good ethics, along with the skill needed to avoid having ethical issues arise.

Child↗
PubMed1997

The Ethical, Legal, and Social Implications Research Program at the National Human Genome Research Institute.

Organizers of the Human Genome Project (HGP) understood from the beginning that the scientific activities of mapping and sequencing the human genome would raise ethical, legal, and social issues that would require careful attention by scientists, health care professionals, government officials, and the public. The establishment of the ELSI (ethical, legal, and social implications) programs at the National Human Genome Research Institute (NHGRI) and the Department of Energy (DOE) was thought to be vital to the success of the HGP in the United States. It also provided a novel approach to the simultaneous study of ethical, legal, and social issues and basic scientific issues. Eric Juengst, the first director of the ELSI program, described its origins in a previous issue of the Kennedy Institute of Ethics Journal (Juengst 1991). Now in its seventh year, the ELSI program has accomplished much. This article summarizes the evolution and goals of the ELSI program at NHGRI, outlines the program's current research priorities with examples of activities within each priority area, and provides a look to the future, including the initiation of a strategic planning process.

Confidentiality↗